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The Day She Was Diagnosed

It will be hard to forget the day GaSara was diagnosed. I had found her a reliable internist who, in turn, had recommended a dementia‑oriented neurologist. Both the doctors were in a bigger town, Albany, some 35 miles away. The comfort in knowing we had competent medical care there made the trips worthwhile. However, that 45 minutes could seem like hours, when riding with someone who had lost all concept of time and place.

“Where’re we goin’’?” she’d ask.

“We’re going to see your doctor,” I’d say.

“Doctor? Are you sick?” she’d ask.

“No, this is your doctor. We’re going to see what your test results are.”

“No, but we want to find out why you’re forgetting so much,” I’d repeat.

“I don’t forget things,” she’d reply.

“That’s good,” I’d say.

“Where are we goin’?” she’d ask.

And, the conversation would continue like this for the duration of the trip, all the way there and all the way back ‑ incessantly.

We had gone to see her internist the week before. He had done the necessary blood work, an EEG, EKG, and a CAT scan. He found she was anemic; her hemoglobin was really low. I thought optimistically, “Surely, if I weighed 100 pounds and was anemic, I might have a hard time collecting my thoughts too, poor thing.”

The CAT scan showed some “deadness” in the white matter of her brain. Although the doctor said words like “possibly,” “could indicate,” and “could be normal aging deterioration,” I heard, above all else, “small stroke damage.” I wanted, so desperately, to hear it was stroke damage.

Her former doctor had said that was it. Of course, he had never done any diagnostic testing and called her problem “hardening of the arteries,” a term that I knew was worthless. But, God knew I wanted it to be stroke damage ‑ Multi‑Infarct Dementia. It wasn’t treatable, but further damage could be controlled and it was not Alzheimer’s!

The ladies at the public library must have thought I was a little nutty. I had spent the greater part of three months curled up with Gray’s Anatomy. I’d go by the library every two weeks to re‑check it out until, finally, a librarian had to ask me to stop so that local students could have their chance to study the book.

I wanted to understand any and everything I could about GaSara’s brain and any problem she might have with it. In retrospect, I know I was looking for every conceivable way to prove she did not have Alzheimer’s — Anything, but not Alzheimer’s.

It was like the ass‑backward way we’ve all done research papers in school. Develop the theory then find the facts to back it up. As opposed to the proper: research the facts then present a thesis. Gray’s, which incidentally, I went out and bought after the library cut me off, was only one of dozens of books and periodicals I employed in the search for (my) truth.

Back in 1990, “The 36-Hour Day”was another such resource. This book was, and still is, an invaluable source of support and education for dementia families. Yet, I had only allowed it to half‑serve me. When I first got the book, I’d scan through it noting

“This is GaSara; this isn’t; this isn’t; this is her; this isn’t, etc…”

It’s probably safe to say that if the reference was to an Alzheimer’s symptom, “This is not GaSara” was my response. And the “this is her symptom” would generally go to any other form of dementia. If I had learned nothing else in my studies, I knew that Alzheimer’s disease was the most horrible tragedy that could ever happen to my grandma. The disease would only get worse, and she would die in a terribly painful and undignified way. I knew we needed to know. I knew we needed to plan. I even knew that she could have Alzheimer’s. But then, I just knew that she wouldn’t.

“Where are we?” she asked.

“We’re at your doctor’s office,” I explained. “We’re here to see what your tests show.”

“What tests?” she nervously asked. “I’m not sick.”

“No ma’am, you’re not sick, but we’re trying to find out why you’re forgetting so much lately.”

“I’m not forgetting anything. Do you think I’m crazy?” she asked.

Horrified, again, at this familiar question, I said, “Lord no, you’re not crazy! You’re one of the sanest people I know! But you are losing some memory. We just want to find out why and see if we can make it better.”

As we entered the neurologist’s office, I realized that I was terrified. My wrecked nerves were not due, solely, to the trip down there. This was the man who would give us the definitive, the best, diagnosis …

As GaSara’s chatter continued, my mind was speeding. I thought of the week before, when we were leaving her internist’s office, and my telling her that it looked like stroke damage and why that was good, because it could be Alzheimer’s disease, and that would be much worse.

“Why did I tell her that?” I wondered. “What if it is Alzheimer’s? NO! It is not Alzheimer’s!”

I was driving myself insane over the prospects when the receptionist called her name.

As if I would let this perky little know‑nothing take my know‑no‑better grandma past that door alone! Needless‑to‑say, arm in arm, Grandma and me went back together.

The doctor was nice. He treated GaSara with respect, and we both liked that. She was always a sucker for a handsome young man who had been taught to say, “Yes, ma’am.”

He explained that he had reviewed the internist’s findings and the CAT scan, but wanted to do some neurological testing as well. This would include a mini‑mental status exam and related questions regarding space and time. He assured me she would be in good hands while I waited in the other room, explaining that often patients look to their loved ones for answers and/or are distracted by them during the testing. It made sense. So, telling her I would be right outside, I left her with the man who knew.

For what seemed like days, I paced…stepped out for a smoke … paced … smoked … got a drink of water … smoked… paced, until, an hour later, the perky one called me back in.

The doctor invited me into his study. My knees were shaking so badly that, when I sat down, both legs were bouncing off the floor.

“Where is GaSara?” I asked, as if he had hidden her in some dark dungeon!

He told me she was just fine and in another room with the perky one. I figured it wouldn’t be for long, so I let it go. He explained it was better that we speak alone, regarding his findings.

“And what are they?” I asked impatiently and as if I were in any way prepared for his answer. I remember thinking, “It’s gonna’ be okay; just shut‑up and listen!”

He started by praising me for seeking every possible test to try and determine the reason for her memory loss. And then, reciting all the studies that they had done, he shared his conclusion.

“Mrs. DuPre is in the advanced stages of Alzheimer’s disease. We call it Senile Dementia of the Alzheimer’s type. She will get progressively more impaired and, more than likely, the progression will become more rapid.”

“Wait a minute!” I pleaded. “What about Multi‑infarct dementia? What about stroke damage?” I was genuinely stunned.

“There is no evidence of any stroke damage at all,” he said. “There is some vessel deterioration, normal for her history.”

I think he knew, somehow, that I was maybe, too well‑studied on the matter, yet in denial, when he went on to explain that, “Of the many dementia cases I have evaluated, rarely have I seen a clearer, more textbook, presentation of Alzheimer’s than I do in your grandmother.”

He said that he was really amazed that I had been able to care for her, at home, for this long.

Admitting that I knew it was impossible to be sure, I asked him for a prognosis.

“How long do you think she will have to live with this?”

“Considering the extent of her cognitive losses already, I would not expect her to live more than two more years,” he replied. He did his best to reassure me again.

Then, with a firm but gentle handshake, he sent me on my way.

“Where’re we goin’?” GaSara asked, as we pulled out of the parking lot.

I know I must have been in shock. So much was running through my head.

“Advanced Alzheimer’s disease … text book case … two more years.”

“Where’re we goin’?” she asked.

“No sign of stroke damage.”

“I’m not sick.”

“It could be much worse.”

“Why did I tell her that?

“I’ve got to tell the family.

“Will it make any difference?

“What will they do or say?”

“Where are we going?” she exclaimed.

“We’re going home, GaSara,” I said, with an enormity of sadness, frustration and confusion.

2 comments

Sissy I love this webpage. I had no idea you were a caregiver also. I have been care giving or serving as a private sitter/companion since 1997. I presently sit with a client on the weekends while finishing my Master’s degree. I have experience with Alzheimer’s, hospice etc. Aging is not for sissies that is for sure! But, I am happy I can be of help and it comforts me to know I am making a difference in someone’s life. It also pays the bills! LOL!!! Great work Sissy! You have a huge heart!

Hi Lisa!
I had no idea you were working as a private sitter. I might have a number of referrals for you coming up. 🙂 And good for, for getting your Masters! Thanks so much for looking at my site. Please share it with the Caregivers that you run across in your work and private life. Sadly, more and more of us will need support into the future. Thanks for what you do!
sissy